#nf2 — Public Fediverse posts

6/6

Weitere NF2 Fighter (von ganz vielen, hier ein Auszug) mit wissenswerten Infos rund um NF2 bei Instagram

@somehowdeaf [dt]
Larissa + Greta / Lebensmut

@nf2.arch [engl]
Michael Archer

@livingwithnf2 [engl]
Helen Bray

#NF2 #NeurofibromatoseTyp2 #Neurofibromatose

5/6

Das Foto zeigt Denis' Gravelbike, das ihn auch sicher nach Hause bringt. Die Rahmentasche ist von seiner Lieblings-Manufacturer Sundlin Bags, Berit Zöllner in Berlin Buch, extra für ihn individuell gefertigt, eine Rahmentasche für sein Gehstock.

Falls Ihr mehr über Denis, über NF2 erfahren und lesen möchtet und Ihr auch bei Instagram seid: @derdenis_nf2cyclist

[Er freut sich ganz sicher!]

#NF2 #NeurofibromatoseTyp2

4/6

Denis

-- NF2 diagnostiziert vor 30 Jahren, seit 20 Jahren taub, Polyneuropathie in allen Gliedmaßen, Gesichtslähmung. Regelmäßige Klinikaufenthalte, unzählige OPs (Tumor-Entfernungen), viele Tiefs, Ängste, Sorgen, aufbauende Ergo- und Physiotherapien --

[ich habe seine Erlaubnis, ihn zu nennen, Instagram @derdenis_nf2cyclist)

hat mehrere Lebensmottos:

Radliebe
Das Leben ist schön
NF2 Cyclist
NF2 Fighter
NF2 Is A Bitch
F**ck #NF2
Wat mut dat mut

Seine Liebe zum Radsport ist ungebrochen.

3/6

Die Unsicherheit,

ob sie am nächsten Tag noch laufen, radfahren, stehen, hören können

(weil die Tumore ständig im Wachstum sind bzw. irgendwo an unerwarteter Stelle im Körper plötzlich da sind und bis dahin gute Körperfunktionen einfach so, wie aus dem Nichts heraus, blockieren)

ist ihr Lebensalltag.

Jeden Tag können Betroffene damit rechnen, wie nach + nach intakte Körperfunktionen ausfallen ... oder sie wachen mit schiefer Mimik auf.

#NF2 #Neurofibromatose #NeurofibromatoseTyp2

2/6

Langsam wachsende gutartige Tumore - Neurinome, auch Schwannome genannt - belegen das periphere Nervensystem und Rückenmark. NF2 Betroffene leiden häufig an Polyneuropathie, okuläre Auffälligkeiten (z.B. unkontrollierbare Augenbewegung, Katarakte), Hörstürze, progredienter Hörverlust, Tinnitus, Schwindel, Gleichgewichtverlust.

#NF2 #Neurofibromatose

HerzensThema Toot

#NF2

Dadurch, dass ich eine Freundin mit NF2 hatte (M., ich schicke Dir ganz viele Herzen in den Himmel!)

und einen radfahrbegeisterten Freund habe, der bei Instagram zu diesem Thema aktiv ist, bin ich auf diese Weise eng damit verbunden /ally.

Was ist NF2

Neurofibromatose Typ 2 ist ein erblich bedingtes Tumorsyndrom, eine seltene Krankheit, die etwa 1 von 25.000-30.000 Menschen betrifft. Symptome sind idR erst im jg Erwachs.alter sichtbar.

1/6

#NeurofibromatoseTyp2

Im feeling better. I also had a busy day. Saw a physiotherapist.  I was able to walk stairs and walk short distance with walker. I saw occupation therapist to see about going home asap. I also saw an assistant to my neurosurgeon. They explain to me MRI i had showed I have a clavicle tumor on my neck. Its benign like all my tumors. It's a high risk surgery. I said no surgery. We discuss the prospects of palliative care. I maybe coming home tomorrow. Thats good news. #Neurofibromatosistype2 #nf2

Well that is uncanny. I couldn't get up from couch to wheelchair because of nerve pain. My dad had to pick me up and put me in wheelchair. Everyone is concerned. #nf2

So this is consumption. A little bit more death each day. I haven't done as much as i would like. Connecting with people, creating situations for mini miracles, but when i do go out and be my authentic self its happiness to be blessed by people who care about you. #starseed #nf2 #5D #newearth

I feel like a sick boy. My best days gone. I got a tumor growing in my gums but neurologist said mri of my brain and spinal tumors is more important. I dont have cancer. I have #nf2 my tumors are beign. I have had brain and spinal tumors removed. I ain't having surgery again so trying to gracefully leave this world. I know my love and presence will be missed.. I feel sad when i don't contribute any value to the world. I'm just sick now. I think about what is my "vow" to my soul mission. #pray

Ìm out cruising in my scooter. A man stop his car to ask me a question. I drove over to him and got my phone out and open my voice to text app to read what he was saying. I told him to speak louder because I'm deaf. I knew he wanted directions. All I read was "im sorry." #nf2 #deafculture

About to go to bed. I just took a Tylenol and hope it numbs my leg pain. I haven't had a good night sleep in months. I also had some reiki and sound healing this afternoon. My energy is out of tune and reason for body pain. Being in tune takes discipline and a good fight is ahead of me to self heal and have self empowerment. #nf2 #newearth #intention #prayer

Im fantasizing about driving my scooter to the cemetery for a nap. Best way to experience heaven on earth. #nf2

@georgia I have power naps throughout the day. I just learnt sleeping in the rocking chair is more comfortable than bed. The position of sleeping put less pressure on my spinal nerves. But getting out of this rocking chair will be tougher than getting out of bed. #nf2

Now that my spinal tumors have because of #nf2 I have left hip pain. It's hard to bend over to pick up stuff from fĺoor and lay in bed. It's hard to without periodically waking up every 1 or 2 or 3 or 4 hours. So my sleeping patterns are power naps throughout the day. Time for a nap since I'm pain free atm. Cheers.

I was worried about the lump in my gums for 3 months. I thought I had gingivitis. I don't like the dentist. It's a bsdm visit. If I smiled it wasn't noticeable. It finally was noticeable mom was worried and made dentist appointment. I saw dentist and he had no clue what it was even after xrays. He said won't touch it with a 10ft pole. He said I needed 2 teeth pull bc they were broken. Long story short the lump is a tumor. It is normal for people with #nf2. Routine surgery like a tooth removal.